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Make Sure Carolyn Is Not Alone This Holiday Season

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Still plodding along

I apologize in advance for the weird formatting, but blame CaringBridge, because my blogs are formatted correctly when I enter them.


I
finished the new course ahead of time last week. 
It was fun up until the last chapter, where I had to explain the HIPAA
Omnibus Rule that the government enacted this year.  Trying to condense 500+ pages of federal
regulations into a few pages of simple, everyday language is mind numbing.  I read several articles that purported to
“simplify” the important points as they applied to physicians, but all were
written by attorneys, were barely easier to comprehend than the actual
regulations, and several of their interpretations conflicted with each
other.  When I finally finished, I had to
put my brain in a splint for three days to allow the circulation to return.



During my
break, I found a handicap minivan for Carolyn on Craig’s List.  New ones go for around $50 to $60K, which
includes the $12.5K conversion cost to accommodate a wheelchair.  I found a 2003 Chrysler Town & Country with
60,000 miles on it for about 1/3 that price and had our mechanic check it
out.  Given that we’ll only be using it a
few times a month, an older model suits us just fine.  It has an electric foldout ramp that opens
and closes at the touch of a button.  I
can just wheel Carolyn in, lock her wheelchair in place, buckle her seatbelt
and go. 




As another
part of my break, I had the posse over for dinner on Saturday.  Bethany, our new regular caregiver, and I brought
Carolyn down that afternoon so she could watch me cook.  She seemed rather sullen and disinterested,
and I worried that she wasn’t in the mood for company.  I thought about taking her back upstairs and
having just two or three people visit her at a time so as not to overwhelm
her.  But we decided to keep her
downstairs and see how things went.  Mike
and Deb arrived first, and she immediately perked up and was all smiles.  As the others arrived, she just seemed to get
happier and more engaged.  We ate dinner
in the screened breezeway on the south side of the house, and she seemed to
enjoy herself until about an hour and a half into the festivities, when she
started looking fatigued.  So Bethany took
her back upstairs and put her to bed.




Having
these dinners is good for my morale as well as Carolyn’s.  Being with her every day, I don’t notice many
of the tiny but cumulative improvements in her overall level of awareness and
cognition, and her attempts to communicate. 
But people who haven’t seen her in a few weeks do notice, and having
them point out their own observations reminds me that we are making progress,
however slowly.  And, of course, who
doesn’t enjoy an evening of dinner, drinks and laughter with friends?




Carolyn’s
behavior is, on occasion, more complex and showing more personality.  This afternoon, I handed her a chocolate,
which she took and started to put in her mouth. 
Then she stopped, looked at me with a grin, and started to throw it off
the side of the bed.  Just as I said
“Don’t!” she laughed at me, then popped the chocolate in her mouth and ate it.  In the mornings, sometimes she awakens me by
softly calling my name.  Granted, it
still sounds more like “Nim,” but the love in her voice and smile is
unmistakable.  The people who say to me
“I don’t know how you do it” have no clue about what it means to be totally
committed to another person.  I couldn’t
imagine not doing everything I can
for her. 




About 20
years ago, I had a freelance job editing training manuals for a medical
specialty organization.  The one that
left the biggest impression on me was on the topic of locus of control and
personal satisfaction.  The author’s
point was that, if you have an external locus of control—meaning that you
believe that your life and happiness are controlled by outside persons and
forces—you will never be happy or satisfied because you will always feel
yourself a victim of circumstances.  But
if you have an internal locus of control—meaning that you feel yourself in
control of your own life and happiness, and that it’s up to you to either adapt
to your situation or change it—then you will make yourself be happy and
satisfied. 


Our lives
are, in the final analysis, the sums of our decisions.  I haven’t always made wise decisions.  But they were my decisions, and I’m content to live with the consequences, both
good and bad.  And one of those decisions
was to be happy and make the most of my life, whatever comes my way.